A little about me

My life has always been complicated.  From growing up in a very racist London in the sixties as an adopted child of mixed race, to tracking down both of my natural parents only to lose them both again.  To finally getting everything I ever wanted to then getting two rare endocrine illnesses that stopped me in my tracks.  Life never stays the same.

This is the challenges I have overcome and the ones I still face. I’ve been pushed to the edge but learnt, somehow, to keep on going.  I hope, over the months and years, to share with you some of my views and my stories from the past.

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Not if I see you first – Part two. Midday train to Portsmouth

If you have not read part one this won’t make much sense!

To me injustice hurts more than anything else. Not getting the chance to explain and rectify a misunderstanding. Others thinking things of you which are just not true, and no chance of redress. This to me has always been the hardest thing to accept. That overwhelming feeling of unfinished business that haunts you. The ‘what if’s’ and the scenario played out in your mind a thousand times.

I was at that station at the correct time on the correct day but have never had the opportunity to prove it.

After the disastrous first meeting with my natural Mum at Gatwick Airport and the disappointment that she wouldn’t be staying with me, I was thrilled when her friend phoned to say Mum wanted to come and stay.

I had only passed my driving test recently and I couldn’t contemplate the long drive to pick her up.  Also with two small children and a husband at work – who no way would ever stop for a day to help me – the only other option was for her friend to put her on a train. There wasn’t a direct route to my nearest station so we agreed the best thing would be for her to stay on the train from start to finish, getting off at the end of the line.  What an earth could go wrong?

I had frantically prepared my home.  The kids were put into one bedroom to share so I could get a room ready for Mum.  The shopping was done.  The meals planned.  The excitement at level 10.

On the day I left my youngest child worth my Mother-in-law and took my three year old daughter with me to the station.  It was about a thirty minute drive from my home and I left very early and gave myself plenty of time.

In the early 1980’s you could buy a platform ticket for meeting and seeing off people.  I bought my ticket and stood on the platform holding on tightly to my daughter’s hand.  As it approached midday I could hardly contain my excitement.  This was a momentous occasion for me.  This was something I had been waiting for a very long time – the opportunity to get to know my Mum.  The train arrived and people started to get off the train.  It wasn’t too busy and I would be able to see her clearly without a problem.  Everyone left the train – she wasn’t there!

A panic shot through me.  My mind was racing.  This couldn’t be happening.  Then it struck me – there were two stations in Portsmouth.  Fratton Park (Portsmouth) and Portsmouth Hard (as it was called back then).  Oh my god, could she of got off at the other station? I spoke to the guard and he informed me that another train was due in soon and maybe she would be on that one.  I waited.  She wasn’t on the next train either.

In a blind panic I started explaining to one of the station staff that my Mum had been very ill and I was now seriously worried about her.  I begged him to contact Fratton Park station and ask if they could see her waiting there.  He almost laughed in my face.  He must have thought it wasn’t a big deal and found it all amusing.  I went on to explain that she had been in an accident and had a brain injury and had been in a coma and maybe was at another station in a confused state. He did ask the other station to look out for her but they told him there was no sign of anybody hanging around.

Early 1980’s so no mobile phones back then just telephone boxes.  I phoned my ex-husband, which of course was a complete waste of time.  By now I was in floods of tears and asked him to drive to the other station and have a look for me.  He actually worked in Portsmouth but still would not help me.  He suggested that she probably got a taxi and went to the house.

I drove back to my home with every minute of that thirty minute drive seeming like a week.  I was just totally numb.  When I finally reached my house a neighbour immediately ran out of her house.  She told me that a woman had been knocking at my door and seemed very distressed and then got back in the taxi and left.

This couldn’t be happening.  Where was she now?  Where would she go? I couldn’t search, where would I start?  She had gone and could be anywhere by now.  I phoned her friend in Bristol to explain what had happened but what could she do?  We were both helpless. This was one of the worst days of my life and I didn’t think it could get much worse – but it did.

A couple of hours later I received a phone call.  A woman was screaming down the phone at me.  ‘How could you be so cruel, why didn’t you go to the station’. She went on and on and I couldn’t get a word in.  By now I lost it completely and was crying hysterically.  I pleaded with this woman to listen and believe me.  I explained I was there.  I explained there were two stations and she must have got off at Fratton Park which was in Portsmouth also.  No amount of explaining stopped her screaming at me.  It turned out this woman was Mum’s Sister, my Aunt.  Mum had gone all the way to Croydon to her Sister’s house in that taxi.

I can’t even explain how much this all hurt.  The pain was unbearable.  The confusion and the racing mind.  I felt so responsible but I didn’t do anything wrong.  I was there.  I was at that damned station.  I waited.  I desperately wanted to take my Mum back to my home to stay.  I desperately needed this opportunity to get to know her.  To spend time with her.  To ask a million and one questions to fill the gaps and the massive longing feeling I’d carried around with me my whole life.

I plunged into a terrible depression.  I could barely function.  I made an appointment to see my Doctor who immediately prescribed anti-depressants.  I picked up the prescription and drove home.  The next day I tipped the pills down the toilet and snapped out of it – somehow – I don’t know how, but I had two small children to look after.  They didn’t deserve to have a Mum in a state of depression.  They didn’t deserve to have to suffer just because my selfish Mother had abandoned me as a baby.  That was the past.  My children were the future.

A few years later I did see her again.  She was now divorced and had left Dubai and was living in Canterbury.  A strange choice as she was not from that area and all her family were in Croydon.  We drove down to see her.  It was stilted and awkward.  It got to lunch time but she didn’t have any food to offer us and my children needed lunch.  It was completely lost on her that we had driven hundreds of miles to visit and might need to eat something. We went out to buy some food and took it back to her flat.  It was all so cold and unwelcoming.  This was more to do with her accident and the brain damage and coma than anything else, but it still made everything so difficult.

What can you say to someone so damaged?  You can’t ask the things you wanted to, that would probably be upsetting or contentious.  The whole thing was useless and left me feeling empty.  I was searching for something to make me feel better.  Something to make me feel complete.  To understand.  Maybe even someone to show an ounce of affection but that wasn’t coming either.

I felt dejected.  I felt like I’d been left all over again.  I felt cheated.  The 80’s were full of TV programs showing these wonderful reunions with adopted children and their natural parents.  It was everything you expected it to be.  Hugging and crying and a wondrous moment, not a meeting at an airport where you were barely looked at or acknowledged.

Into the madness

Cushing’s syndrome is a cruel illness. You suffer for years as diagnosis on average takes five years. My diagnosis took ten. Everyone overlooked my steroid inhaler. No one worked it out but why would they – they still believed inhaled steroids goes to your lungs and not your bloodstream!

Everything under the sun was blamed for my endless symptoms over those ten years. At first its subtle, the terrible anxiety, the weight creeping up, the insomnia, your blood pressure getting higher, the list is endless – the feeling that something’s wrong but no one believing you.

A rare illness that makes you fat and gives you an array of symptoms gets lost in a world of morbidly obese people who have chosen to eat and drink their way to obesity. You become lost in the system. You appear just the same as them.

You’re fat, tired, anxious, sweating, not sleeping, getting weaker and sicker by the day but the second you walk into a doctor’s office he’s glanced up and assessed you in a split second. They immediately come to the conclusion that you are unhealthy and obviously stuff your face and don’t exercise.

You can plead all you like about how ill you feel but you will not be believed no matter what you do or say. Instead you struggle on feeling so ill you don’t know what to do or where to go for help. There is no help at that stage at all. You blame yourself and convince yourself that it’s your fault. It must be something I’m doing wrong.

You never think you’ll get ill. When you’re well and hear about terrible illnesses you try your hardest to put any fears to the back of your mind. You can’t think about something like that and it happens to other people not you.  It’s a strange existence living with a chronic illness. This is something I had never thought about at all, I didn’t know anyone with a chronic illness and had no idea how devastating they can be to your life.

I became ill very gradually at first. The symptoms very much appeared to be the dreaded start of the menopause and this was the first diagnosis I was given.  I challenged the Doctor over this diagnosis as I was only 40 years old at the time. He assured me that many woman have started the menopause at this age and at that time I was still stupidly believing everything a Doctor told me. A catastrophic mistake that carried on for many years. I had no idea that a correct diagnosis of menopause should have only been made after hormone blood tests. I didn’t get any blood tests and of course, I didn’t know I should have.  From the symptoms I now know I also had  hypothyroidism at that time but blood tests were not ordered for that either.

I know rare illness is difficult to diagnose, but ten years – honestly – what the hell!

 

Friends without benefits

The one similar thing people with chronic illness say, is how it lost them friends.  Now you would think that’s not possible. You would also think the friends you have will be there for you more than ever now you’re ill. Unfortunately that isn’t the case and sadly it is true that friends give up on you when you have a chronic illness.

One of my theories on this is the fact they lose patience because they don’t understand you will not recover. You may improve as time goes by. You may even get back to virtually how you were before you got ill. Sadly though with chronic illness sometimes nothing changes or you get nowhere near back to the person you were and the exhaustion you suffer stops you from socialising either full or part-time.

What compounds this is social media. Before social media close friends would see each other on a regular basis and even if you’ve moved away then you would write.  An email tells you so much of what your friends are doing and how they are. You know things that acquaintances on fb do not, which is why you are a close friend.  However, now we have social media this isn’t the case anymore. We don’t write a personal email, we don’t share everything let alone our innermost thoughts. You become no different to a mere acquaintance. Someone who virtually may mean nothing to them at all suddenly gets invited into their lives. They now know exactly what they’re doing, where they’ve been holidaying, and then can browse their photos also. The privilege of being a close personal friend is well and truly lost. You’re just part of the process.  You’re just listed among all of their fb friends.  Your special status is lost.  The many years of being so close now has to be shared with any old ‘friend’ that’s been added.

Even Christmas and birthdays are changed forever. Gone are the personal cards and messages within. We now have e-cards or just a Happy New Year message through fb. Social media may bring people together but the damage it does to close friendships is here to stay.

If I was still living close by to my friends, I would like to think they would visit and be there for me now that I’m at my lowest point ever in my life. What worries me though is other sufferers of chronic illness aren’t just talking about people miles away, they are mostly talking about friends that are close by. They say they are constantly questioned as to why on one day they can seem well and on others they are not.  You definitely feel you have to justify a chronic illness to people who don’t understand.

I think you get left behind for a number of reasons. When you get invited to social events but are too ill to attend and decline several times, eventually the invites stop. Whether or not you would have improved enough eventually to go is irrelevant.  What’s important is that you’re still asked and not just written off forever.

I live a very long way from my old friends, but I still thought the support I needed would be there in the form of e-mails.  Just something to perk me up, but no, after the first few months my illness obviously became too boring for them.  In one way I was relieved to not have to reply to ‘’are you better yet’’? That question eventually became too upsetting to answer. I had explained over and over that I will recover from most of the Cushing’s syndrome damage – hopefully – but that there is no recovery from adrenal insufficiency and I would be steroid dependent for the rest of my life.

It hurts terribly that my friends knew the adrenal insufficiency had tried to kill me a few times but they still had nothing to say.  Maybe people don’t know what to say, but these weren’t mere acquaintances, these were friends that had been part of my life from fifteen to 30 years.

The hurt and pain will stop me from letting them back into my life.  They were there for all the good times, but not the bad.  The weddings, christenings, parties.  I’ve searched my soul to ask myself if I would also back away from someone who needed me more than ever.  I’m sure I would not.  I hope I would not.  The worrying thing is though, I just don’t know.

 

Not if I see you first – part one

I met my real Mum for the first time at Gatwick Airport.

I was in my early twenties and had already traced my Dad.   I think that is what  made me change my mind about wanting to meet my Mum. I’d always thought I didn’t want to meet her, but I had never felt that way about finding my Dad.  I thought about her in a less forgiving way, probably, unfairly, because she was the woman and men never seem to be held accountable for abandoning their children.

It wasn’t that difficult to trace her.  My adopted Mum had given me various papers and among them was the statement she had made to social services about why she was giving me up.  It mentioned that she had been born in Calcutta, India and had several brothers and sisters.

Her parents must have come to the UK at some time in the 1950’s.  Most importantly, this statement also had her maiden name on it.  Tracking down one of her siblings was too easy.  Their surname was very unusual as my grandfather was Dutch, so to find anyone listed in the area I was from was unbelievably simple.

It must of been one of my Uncle’s that I spoke to.  It was weird to say the least.  He knew who I was but there wasn’t really any emotion, it was all quite matter of fact.  It turned out my Mum didn’t live in the UK anymore.  She was living with her husband and two children in the UAE.  Dubai to be precise.  So, I had a brother and sister – well a half-brother and sister anyway.  As for the UAE, it might as well have been the moon.  I had never heard of the place.  Remember this was the early 80’s, I had never met anyone or heard of anyone moving to the Middle East back then.

I sent her a letter, but before I received one back from her, I received a letter from her husband – I’m not sure what he would be to me?  A step father?  Adoption makes you legally nothing to do with your birth parents so I don’t really know what he is to me – there was  nothing that could have prepared me for what I was about to read.  He said that Mum had never forgotten about me and mentioned me often, but if only I’d found her a year earlier.  He went on to explain that she had been in a car accident.  He even enclosed a clipping from the local paper.  Maybe he thought I wouldn’t believe him.  He said she has been seriously injured and had been in a coma for six weeks, and had to learn to walk and talk again, and she just wasn’t the same as before.

‘Same as before’ didn’t really register with me as I hadn’t known her ‘before’.  I also, in my early twenties, had little knowledge of what being in a coma does to someone.  My understanding of being in a coma was from Hollywood films.  The person wakes up and everything is fine.  Now I know it is not fine at all.  I wish I had the understanding and knowledge that I have now about the devastating effects of being in a coma when I had received that letter.  He said that she did want to see me, he just felt he should write to explain what had happened first.

The first few letters that went back and forward between London and Dubai were mainly made up of small talk.  She didn’t ask the sort of things I’d been expecting.  There were no questions about my adoption or childhood.  I suppose those were contentious subjects.  What was in the letters though was an invite to Dubai to come and stay with her, to meet my brother and sister and her husband David.

This was one of the most exciting things ever to have happened to me but my ex wasn’t that thrilled.  A very unemotional man and he just couldn’t even acknowledge what a momentous event this would be.  Maybe pissed because he wasn’t invited also.  He was a workaholic and not in a good way.  He saw looking after our two very young children – if I went away – as a hindrance and something that just got in the way of his work and football matches.  For that reason alone he wasn’t pleased for me at all.

My Mum said they would send me a ticket to fly out to stay with them.  As it got closer and closer to my travel date I began to get more worried as the ticket hadn’t arrived.  There wasn’t email back then.  There were telephones of course – land lines – but we strangely hadn’t got to the stage of talking on the phone yet.  With days to go and still no ticket, a telegram arrived.  It said there was a change of plan and she was coming to the UK instead.

I don’t know why or what caused this ‘change of plan’ and at first I felt a massively disappointed.  I thought about the suitcase I’d just bought.  I’d never even had a suitcase before.  I’d never been anywhere!  Strange how the mind works at times like this.

Eventually the disappointment turned into excitement and started to make plans for her arrival.  I put the kids into one room so I could prepare a bedroom for my Mum, but then a letter arrived from her and she said she wouldn’t be staying with me and was going to be staying with a friend in Bristol!  What!  Now I was upset, this was all changing from exciting times to disappointments one after another.

She gave her friend in Bristol my telephone number and her friend called me.  She explained that she had worked in Dubai with my Mum.  I understood her wanting to stay with this friend.  After all I was a stranger and she was still recovering from the terrible accident and coma. Her friend told me that she was meeting Mum at Gatwick Airport and did I want to come also.  Yes, Of course I did.

It must have been a week or so until her arrival day and I can’t even put into words the emotion and thoughts that go through your head.  That day couldn’t come fast enough.  I arrived at the airport and met up with her friend and then we both stood at the arrival gate.  It wasn’t a complete shock seeing her walk through the gate as when I first received that letter from David he had also enclosed a photo of her and my brother and sister.  Because of the photo I recognised her straight away, but she looked so much older and considering the photo had been taken shortly before the accident I can only assume the trauma must of aged her rapidly.   She rushed over to her friend and they hugged each other.  It seemed like forever that they were engrossed in conversation until she eventually turned and looked towards me.  ‘You must be Zoe’ is all she said.  No hug, nothing else, just that.  No emotion, no tears, no running across the concourse and rushing into each others arms like you see in films and those tv programmes where people get reunited with long lost relatives. Whatever I had been expecting it wasn’t anything like this.

For some unknown reason I mentioned about her being born in India.  To be honest, what do you say to a complete stranger.  I knew nothing about the woman apart from those adoption statements.  Her reaction was staggering.  She looked absolutely mortified and said ‘no I was not born in India I am from Trinidad and Tobago’.  I knew this wasn’t true but quickly shut up.  Years later I realised exactly why she lied and especially because her friend from Dubai was standing there – but another day for that story.

The three of us went to a coffee shop inside the arrivals hall where the animated conversation between her and her friend continued.  I was barely acknowledged.  Then off they went.  I got back into my car and just cried.  A lifetime of building up this meeting in my mind and I felt betrayed.  I felt abandoned all over again.  I’ve had things like this happen to me a lot in my life.  Things that bring you to your knees and you think it’s the end of the world and you will  never be able to recover – but you do – you pick yourself up and keep going.

A few days later I received a phone call from her friend.  Mum wanted to come and stay with me.  The excitement started to build once again.  Now, I thought, everything will be OK.  But, no, it was not.  Life isn’t supposed to be that easy.

Part Two another day.

Mirror Mirror

To look in the mirror and not even recognise yourself is a terrible thing.  Illness has taken so much away from me.  My work, ability to drive, to walk, to socialise, but to have your very identity stolen is incredibly painful.  Is it vanity?  Maybe so, but a round face with a big puffy neck and a hump between your shoulders – another disgusting Cushing’s symptom – wasn’t a look I was going for.  Everything you did before has changed right down to your choice of clothes.  You can’t choose anything when you’re a size 26!  It’s always about what you can find that you fit into.  As for nice shoes – forget it.  You cannot walk in high heels when morbidly obese combined with muscle damage.  As if you would be well enough to be able to go anywhere anyway!  Of course, I also forget sometimes I can’t stand for long anyway!

Isn’t a woman’s choice of clothes a lot to do with their identity?  I think so.  Too many things are chipped away and this has a devastating effect on your self-esteem.  To be more precise, your self-esteem left.  It gave up the day you took a really long look in the mirror.  Confidence and self-esteem go hand in hand so that goes out of the window also.

It’s now coming up to four years since the Cushing’s and adrenal insufficiency diagnosis and only a few kilos have come off. Every day for years before and after diagnosis I’ve stood on those scales. Before diagnosis the utter despair as I watched them keep going up and now after diagnosis the crushing blow as you do everything you can to try to make them go down and not much happens. It’s a form of torture.

The day I was diagnosed with Cushing’s it was explained to me how this hideous illness changes the process of how protein and carbohydrate is metabolised and how through no fault of your own it makes you fat. The specialist said there was nothing I could have done to prevent it.  It has nothing to do with lifestyle or what you ate.  This is particularly true when you look at the pattern of how this illness progresses.

When you start gaining weight the first thing you do is cut down on your food intake and increase exercise.  Imagine getting to six years later and you’ve still gained weight.  It is now completely out of control.  I then took the next step which is pretty common place among cushies before diagnosis, and cut so much out of my diet that I left myself completely weak and low on essential vitamins.  You virtually stop eating as you become in a state of confusion and shock.  You have lost control over your body.  You feel ill and strange and gain weight at the rate of knots.  All the Doctors’ you consult tell you off.  You have now listened to years and years of Doctor’s telling you you’re eating too much and not exercising enough. You become brainwashed and believe it is true.  Somehow this is your own fault.  You hate yourself, you cut down even more and exercise even more but the weight gain doesn’t stop.

By the time I was diagnosed I was living on protein shakes and had given myself vitamin deficiencies.  Those in turn caused a whole host of problems and anaemia’s just to add to everything else.  The Professor in Endocrinology who had finally diagnosed my Cushing’s syndrome told me to just eat normally.  Now I do eat normally but am very careful.  I have massive hang ups about food now.  At least once diagnosed your Doctor’s now stops being so nasty.   They all say the same thing “good god, we haven’t heard about Cushing’s since medical school”. My regular Doctor’s almost seemed sorry how they’d all missed the fact I was very ill.  Almost, but not quite.  Compared to the constant accusations of being an overeating sloth at least now there was some respect.

If I had a family

I’ve always wished I was surrounded by family.  I was adopted when I was four years old and my adopted parents had a daughter of their own so I gained a Sister too.  I also gained the various relatives of my adopted parents.  It never worked out.

I can remember from a very young age – up until the day I finally walked away from this family – something that my adopted Mum said to me over and over again.  ‘Your Dad’s a thief and you Mum’s a whore’.  Now, obviously, I had no idea what an earth this meant when it was first being said to me, but as I grew up I realised just how bloody mean it was.  It always ended with her saying ‘we dragged you out of the gutter’.  I’m still confused as to what my response was supposed to be!  Should I have said thank you?  Should I have said I’m sorry?  I didn’t know what to say so I never said anything.

I’m not against adoption.  Who an earth would be?  It is an amazing thing when someone adopts a child into their life to love and nurture.  What I am against, is how in the 1960’s, it didn’t seem to matter whether an adopted parent was wholly suitable or not.

Growing up in London in the 1960’s wasn’t easy.  I just remember everything as being quite grey.  The ugly Victorian school was a prime example.  My real Dad was white British and my Mum was half Indian and half Dutch.  Not that I knew or understood any of that until older.  What I did understand though, was how divided and hateful school was.  The children had divided themselves into three groups.  White British, Indian and West Indians.  I wasn’t white and I wasn’t black.  I did look very Asian though with my tanned skin and long hair in a plait.  The trouble was the Indian kids would not accept me into their little group as I clearly didn’t identify with them.  That was my very first experience of racism, but from all sides, the Brits, the West Indians and the Asians all at the same time.  Needless to say school was hell.  I was asked constantly why my parents were white and I wasn’t.  I learned at a very young age that I didn’t fit in.  Not at school and not at home.

The one thing I have never done as an adult, is to blame my childhood for anything.  A million and one things happened, but I always have looked forward and tried to never look back.  What you do with your life should never be compromised by the past.  If anything, it made me very independent and stronger.  I learned from a young age to look after myself, but I do wish – and always will – that I’d never been adopted and had been with my real family.

As it turned out I discovered years later that my Dad was indeed a ‘thief’.  I have, however, never discovered anything that would point to my Mum being a ‘whore’.  I think my adopted Mum referred to her as a whore because she wasn’t married to my Dad.  I know in the 1960’s it was still classed as something terrible and shocking to have a child out of wedlock!

I found my real parents when I was in my twenties.  So much to say about all four of my parent’s, but another day!

I think now because I am not well and can’t do much, it’s made me think a lot about the past.  My childhood doesn’t upset me anymore.  What does get the better of me though is being ill.  To be so strong and independent and then end up like this where I haven’t even been able to drive for four years has definitely been the worst time of my life.  I will get better though and I’m sure I will eventually be able to drive and walk round a supermarket again.  A supermarket!  Who would have thought it possible that you could miss doing the weekly shop?  I guess it’s because it’s something normal and that’s what I need, some sort of normalcy back in my life.

 

New batteries please

The only thing I can compare adrenal insufficiency to, is feeling as though you’re run on batteries.  You mustn’t let the battery run out completely or you’ll be very ill.  You also mustn’t use too many because more than you need will also make you feel unwell and lead to all sorts of long-term damage.  Basically you eventually learn how many batteries you need – this can take years – when you find the magic amount then you have to take into account that everyday has different challenges and different requirements of energy, so now you have to second guess how much extra will be needed and when.  Should you wait until the batteries are starting to fail to add more or should you somehow try to work out if you should have more beforehand?

This is adrenal insufficiency in the 21st century!  Dosage and literature still based on fifty year old information.  Having to break up steroid pills into halves and quarters as although these pills are keeping us alive it is only a tiny physiological dose that is needed – unless we get ill and heading for crisis when we have 100mg shot – having to split our daily dosing into three or four times a day to keep on an even keel.

It is astounding how many Doctor’s have never heard of adrenal insufficiency.  They will most probably go a whole career without one single patient who has this condition.  The endocrinologist’s that we see who are familiar with AI also vary enormously with the amount of knowledge they have to manage this condition.  Again, even an endocrinologist can go a whole career without ever having an adrenally insufficient patient.

This is the main reason that rare endocrine illness can take years to diagnose.  It’s complicated stuff, which leaves the patient pretty messed up by the time it’s diagnosed.  When you do finally get a diagnosis you are so relieved to know exactly what the hell is wrong with you.  You at last can stop thinking you’ve gone completely mad.  All very much short lived when you’re sent away with a bottle of either hydrocortisone or prednisolone and told ‘try this much, once or twice or three times a day’.  There is no set dose.  There is not a Doctor anywhere on this earth who knows exactly how much you need to maintain any sort of a normal existence – ie. getting out of bed and having a shower.  The devastating disappointment when you realise this is going to take a long time to figure out, and boy it does.

After four years of living with this hell I finally found my normal daily amount needed and what times I should be taking it.  It took two years of keeping a diary.  Writing down everything tried.  Amounts, times etc and listing results.  Eventually a pattern formed and I fine tuned it so I’m not on a permanent rollercoaster of too much or too little daily.  As fantastic as this is, there is still the changing goalposts everyday.  An illness, a shock, simply doing too much can all lead to needing extra.  It is a crazy way to live and it’s also a dangerous way to live.  The simplest of things can send you spiraling into an emergency situation so fast.

Despite living with such a stupid fucked illness, I try to pretend everything is ok.  I’d like to say I try to forget about it but that’s made impossible by the fact the second we wake we must swallow some steroid.  A few hours later – and it’s best to stick to the same times – an alarm goes to remind me another dose is due and then nearing bedtime another one also.  Hard to forget about it when you have to set a bloody alarm to stop you forgetting.

How long would someone with AI live without their steroid pills?  Maybe two days if lucky.  I dread to think how much you’d suffer before death got you.  Just missing one dose you feel so ill.  The pains in your side, stomach and back.  The dodgy stomach and throwing up.  The cracking headache and utter weakness where your muscles can’t function properly.  The shallow breathing as your cardiovascular system can’t work properly.  Basically cortisol controls everything in your body.  It’s not called the life sustaining hormone for nothing!

Today I made my Christmas cake.  Used to be easy but now it’s not.  Combining AI with the Cushing’s Syndrome damage which stops me being able to stand for long, makes cooking difficult.  The clock is ticking and I will reach a cut-off time where I just can’t stand any longer.  Today, for example, when I reached the ‘you have to sit down now’ time, I’d exhausted myself so the low cortisol symptoms joined in too.  An hour on the sofa, a little bit extra of prednisolone taken and then the whole process starts again.  It has improved compared to the last three and half years.  I’ve definitely turned a corner and getting stronger and sometimes when I need to sit I haven’t also got low cortisol going on as well.  I must slowly be getting stronger, but this is a strange way to live.